All stakeholders interested in paediatric medical device development are invited to a dynamic 3-day virtual public meeting developed and guided by a multi-stakeholder group including the Critical Path Institute (C-Path), Food and Drug Administration (FDA), AdvaMed, American Academy of Pediatrics (AAP), and leaders of pediatric health systems. The meeting will be held on the 9,…
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The European Medicine Agency (EMA) will organise a public meeting on 11 December 2020 to inform European citizens about the EU regulatory processes for the approval of COVID-19 vaccines and the Agency’s role in their development, evaluation, approval and safety monitoring. The COVID-19 pandemic is an unprecedented global crisis, with devastating health, social and economic…
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The European Research Network TRANSPLANT-CHILD is organising the 2nd TransplantChild workshop on translational research: « Novel strategies in paediatric transplantation » which will take place on November 30th, 2020 online. The main aim of the course is addressing training in paediatric transplantation according to the holistic approach of the network, providing skills to perform a common and…
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The Executive Summary of the 10th European Conference on Rare Diseases and Orphan Products held on 14 – 15 May 2020, is now available online. The interactive Executive Summary is a document compiling the key takeaways from the conference, highlights from each theme, key facts and figures on the event itself, full list of committee members,…
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RD-Connect GPAP will present the new module GPAP-Phenostore, used to collect standardised phenotypic information from individuals whose omics data will be analysed. An introductory video of this new module can be accessed here. The online Webinar will take place next Thursday 26th November from 15h (CET) to 16h (CET). If you would like to attend,…
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We are pleased to share with you the initiatives dedicated to paediatric patients and families that the European Paediatric Translational Research Infrastructure (EPTRI) has launched in collaboration with European Paediatric Formulation Initiative (EuPFI) to help finding ways of making children’s care devices more user-friendly. The survey questions have been reviewed by the young members of the Italian, Albanian and Spanish…
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EJP RD member and Coordinator of the European Reference Network for Rare Neurological Diseases (ERN-RND) Holm Graessner , alongside with Mary Kearney from the Irish College of General Practitioners and Primary Care Physician and Antonio Federico, Professor of Neurology and Director Unit Clinical Neurology and Neurometabolic Diseases in the University of Siena were involved in the production of the Economist Intelligence Unit’s report entitled “Navigating rare neurological diseases: meeting the…
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It is with great sadness that we’ve learned Prof. Dr. Gert Jan van Ommen passed away. EJP RD honors his creative scientific mind as well as his huge contribution and leadership of the Human Genetics department at Leiden University Medical Centre. We send our deepest condolences to his family, friends and collaborators in this difficult…
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EJP RD is glad to be a part of the organisation of the RE(ACT) Congress and IRDiRC Conference joint online event that will take place on 13-15 January 2021. It aims to bring together scientific leaders, patients, and policy makers to advance research on rare diseases. Patients and patient organisations will share their perspectives and experiences. To obtain your discount, register here before 31st of December. …
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The European Pharmaceutical Strategy was recently released and it includes strengths and weaknesses of the legal instruments and the European Commission is preparing the review of the legislation on medicines for rare diseases and children: the Orphan and Paediatric Regulations. The EFFECTIVENESS of both regulation on the R&D of new medicines for these patients and their timely availability and coverage of unmet needs, the EFFICIENCY in improving their…
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